There will be a debate on trends in funding levels for youth services on Wednesday 28 February at 9:30am. This debate will be held in Westminster Hall and will be led by Rachel Hopkins MP.
What is sudden unexplained death in childhood?
Different terms can be used to describe sudden deaths in children. The charity SUDC UK provides information and an explanation of these, together with resources for families and professionals, on its website: SUDC – Sudden Unexplained Death in Childhood
The term ‘sudden unexplained death in childhood’ (SUDC) is typically used to describe the death of a child, aged between 1 and 17 years, who died suddenly and whose death remains unexplained despite a detailed investigation. “Sudden Infant Death Syndrome” (SIDS) is the term used to describe the “sudden, unexpected and unexplained death of an apparently healthy baby” aged under 12 months. This short briefing focuses on SUDC and highlights where further information on the matter can be found.
This category of death [SUDC] has never been brought to the attention of the Government before, and I will be asking for the Minister and their Department to encourage consistent medical education and training, to help prioritise national scientific research into this category of death and to help immediately update public information to include SUDC.
The National Organization for Rare Disease (NORD) in the United States emphasises that “SUDC cannot be predicted or prevented at this time”. A report published in December 2022 in the UK by the National Child Mortality Database (NCMD) on Sudden and Unexpected Deaths in Infancy and Childhood marked the first time data had been collected and presented nationally, for England, about all unexpected child deaths (and not just those that remained unexplained). It found that “deaths of children who die suddenly at 12 months of age or older, and whose deaths remain unexplained are not well understood”, adding that the “evidence base around contributory factors is weak”. It also emphasised that “sudden and unexplained death in childhood is a rare event”.
The NCMD made 10 recommendations in its report, including “prioritising research on sudden unexpected and unexplained deaths of children over 1 year of age to identify potentially modifiable factors so professionals can work to prevent these deaths”.
Parliamentary Questions on research into SUDC have been tabled by Barry Sheerman MP and are due for answer on 16 January 2023.
Number of sudden unexplained deaths in childhood
Data from NOMIS Mortality Statistics shows that between 2013 and 2021 there were 128 deaths of children aged 1-19 in England and Wales where the underlying cause was “Other sudden death, cause unknown” (ICD-10 code R96). 63 of these were among children aged 1-4 years.
As noted above, the National Child Mortality Database (NCMD) has analysed the deaths of all children in England who died suddenly and unexpectedly after birth and before their eighteenth birthday in the period 1 April 2019 to 31 March 2021. Its findings were presented in its report on Sudden and Unexpected Deaths in Infancy and Childhood. It found that there were:
523 sudden and unexpected deaths of children across the two-year period where there was no immediately apparent cause, a rate of 2.28 deaths per 100,000 1-17 year olds. Death rates were highest among the 1–4 year olds (3.46 per 100,000 population) and the 15-17 year olds (3.02 per 100,000 population).
Table 11, on page 33 of the report, provides further information on age at death, sex, area (rural/urban), deprivation and region. The report also provides information on the ‘birth characteristics of the children’ as well as the ‘social environment background of the children’.
Separately, the All-Party Parliamentary Group (APPG) on Households in Temporary Accommodation asked the NCMD to examine the relationship between sudden and unexpected deaths in children and living in temporary accommodation. A report is expected to be published on Tuesday 17 January 2023. Ahead of its publication, an overview of the findings were published in the ‘i’ newspaper: 34 homeless children died unexpectedly in temporary housing since 2019, damning report finds (inews.co.uk).
Statistics on Unexplained deaths in infancy, in England and Wales, are published by the Office for National Statistics (ONS). The most recent data was published in September 2022 and covers the year 2020.
The ONS also publishes data on Child and infant mortality in England and Wales.
Guidance for care and investigation after a child dies
The Royal College of Pathologists has published Sudden unexpected death in infancy and childhood: Multi-agency guidelines for care and investigation (2016). The report provides guidelines on multi-agency working for all professions involved in the examination of sudden unexpected death of a child and outlines best practice for each part of the investigation process. The agencies involved can include hospital(s), police, children’s social care and the coroner’s office.
The guidance was developed by a working group convened by the Royal College of Pathologists and endorsed by the Royal College of Paediatrics and Child Health (RCPCH).
The RCPCH note that the original guidelines, published in 2004, followed high profile cases of miscarriages of justice involving the prosecution of mothers for causing the deaths of their babies. These events raised serious concerns about the role of the expert witness in court, issues about standards of proof, the quality of evidence and about the procedures adopted for the investigation of sudden unexpected deaths of infants.
In 2018 the Government published statutory Child Death Review Guidance, which aims to standardise practice nationally, and enable thematic learning to prevent future deaths. Specifically, it states that the guidance provides:
[…] a framework for NHS Trusts and Foundation Trusts [for] identifying, reporting, investigating and learning from deaths of inpatients. It requires trusts to collect and publish quarterly information on deaths in their care, reviews, investigations and resulting quality improvement.
The guidance makes clear a multi-agency approach (covering professionals working in health services, children’s social care services, police, coronial services, education and public health) is key to the effective investigation of an unexpected death, and to support families. are
In October 2022 the BBC reported that NHS England will begin a series of measures to improve data collection, learning and information sharing about SUDC. These measures include:
- Piloting systems to improve education of health professionals and gather data to help identify modifiable factors which will go on to establish processes to help manage the deterioration of children.
- Improve information given to families and professionals about SUDC.
- Separately, data from every child whose death has been put down as SUDC since 2019 will be reviewed by the National Child Mortality Database.
The BBC reported that this move has been welcomed by the charity SUDC UK (see BBC News, Sudden unexplained death in childhood: Charity hails new NHS efforts, 15 October 2022).
Support for parents and carers
NHS England has published a guide for parents and carers (PDF) on different aspects of the Child Death Review, including information on support available from key workers, and other sources of support.
There are several organisations that provide bereavement support including:
- The Childhood Bereavement Network childhoodbereavementnetwork.org.uk
- A Child of Mine achildofmine.org.uk
- At A Loss.org ataloss.org
- The Good Grief Trust thegoodgrieftrust.org
Strikes have been taking place across the NHS in England. This briefing looks at when and why some NHS workers are striking and explains the latest pay deals.
Statistics on fees in a child maintenance application, and the enforcement steps taken when child maintenance is not paid on time or in full.